Thursday evening

As we have learned very well, this experience is and will continue to be a bit of a roller coaster. Here we are at Thursday evening, and very little has been done (tangibly) to prepare for possible discharge. Overall Emma Kate is doing very well, especially impressing the PT/OT folks. She can walk holding one hand, and occasionally can go a little distance unassisted. She still has a lot of work to do on her balance- she will often lose her balance a little bit and overcorrect, sometimes nearly falling back or forwards if someone hadn't been there to catch her. She remains a bit wall-eyed, which seems to have significant effect on her hand-eye coordination. She's nearly got her voice back, and she has seriously expanded her vocabulary since she has been extubated. Everyone continues to be pleased with her respiratory situation, but it's hard for us since she still makes as much noise as she did the morning that she went into the OR the first time. She's not distressed about it at all and continues to have O2 saturation in the 90's, but she can be quite loud at times, even when asleep (where before she was silent when asleep).

She had another swallow study this morning- despite our best efforts to plan ahead and do it early in the day when she is typically awake, she went to radiology about 45 minutes after a dose of ativan, and she was not a willing participant, to put it lightly. We couldn't hardly get the straps on her to keep her safely in the seat. She managed to get a couple small sips of honey-thick, and did fine for those. We moved on to nectar-thick, and she took a couple small sips- she had silent aspiration. She tried thin liquids to get a sort of baseline (and maybe because I told her I allowed her to nurse a couple times), and she actually did fine on those (no aspiration) but it was only a couple little sips again. The whole exam was probably somewhat inconclusive because of her agitation and because we didn't really get significant swallows of large enough amounts down. I don't know... the speech pathologist felt comfortable telling us that she can have honey-thick liquids, and still no one will say definitively if I would be taking too much of a risk to allow any nursing. She still suggests that I feed Gretta or pump first so that there is not a lot of volume available, but she won't say it's ok, for the record. I've managed to fend her off today, although it is so incredibly hard- she wants the "mih" so much. She even got a little upset seeing Gretta nurse and kept pointing to herself and saying "Emma!" I will try thickened milk in a cup for her, but that still totally defeats the comfort aspect of it.

So, we're going home with a TP tube in place. (When we actually *go* home) She will be on night feedings through the tube to ensure she is getting enough calories and fluids, and she will be allowed to eat during the day. We have to start with foods that are easy to chew and safe to swallow, and try to monitor for fatigue. The biggest obstacle will be keeping that tube in her nose and not allowing her to pull it.

We're still having some issues with her vomiting... it's just been in the last couple of days (naturally...). First we thought it was related to large volumes being pushed in, or the rate that things were pushed. Then we thought it was coughing to the point of gagging and vomiting. Then we thought it was cold temperatures stimulating her gag reflex as liquids were pushed through the tube through her pharynx. Then we thought it was something related to the syrup/dye in the methadone. Then it happened with her ativan. It's just bizarre to me, and no one seems able to give a reason this is happening in so many differing situations. It's literally like under a minute following the meds going in (even when they're pushed *slowly*) she starts getting quiet, she starts to retch, and she vomits. Sometimes we can tell there's medicine in it, and sometimes it's impossible to know. It's incredibly hard to tell how much comes up. Aside from the frustration of it, the risk of aspiration each time, and the stress/discomfort it causes her, there's the difficulty in figuring out how (if at all) to redose the meds she got before throwing up. We don't want to overdose her (since the goal is to taper the drugs down), but we also don't want her to suddenly have less instead of the safer gradual taper. No one has a real good answer for us.

So here we sit, nearly 5pm on Thursday and it's hard to tell exactly what steps, if any, have been taken towards discharge. I know we'll be hooked up with a home care company to provide what she needs for her tube feedings, and the pharmacy here is going to attempt to dispense all the medications we will need for an unaltered tapering schedule, but we have no idea when we'll be expected to return for what testing. It sounds like the next time we come down to see her ENT doctor, we'll repeat a swallow study and see if she's safe to move on to thinner liquids. Oh, and they did do a cardiac ultrasound yesterday that apparently was fine (second-hand report). I'm so anxious to get home, but the prospect of being home and so far from all that we've grown comfortable with is very intimidating. I mentioned the idea of renting a furnished apartment down here for a few months... I'm more than half serious even...

When we do eventually return home, we will be in isolation-mode. We'll have to limit visitation to just the people who will be in and out to help us- we need to get at least a few months out without allowing Emma Kate to pick up any illnesses... in cold and flu season. We'll have a little at-home family Christmas more than likely, and will be limiting travel to back and forth visits to Winston-Salem for rechecks. We really appreciate everyone's support and willingness to help out, and we hope everyone understands our need to be overly diligent at protecting Emma Kate from exposure to potential illness during this time.